A Possible Source of Anxiety

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In the city where I live in California, we voted to ban plastic bags. The plastic bags were ending up in the Pacific Ocean, in storm drains, and on the beach, threatening wildlife and causing damage to the environment. I have been concerned about the environment and lessening my footprint on it for over thirty years (my first husband was an environmental scientist) so, I was 100% behind banning the bags.

It turns out that banning plastic bags increased the cases of Hepatitis A in our city. How are the two related? People who live on the streets and in encampments were using the plastic bags as toilets and then disposing of them. When plastic bags were no longer readily available people started eliminating on the street and in places where people walk, sit, sleep and walk their dogs.

Fecal contamination spreads hepatitis, and the best way to prevent it is to wash your hands frequently. People on the streets don’t have access to hand washing stations (they do now). So, the lack of a proper way to dispose of waste combined with no accessible hand washing stations created an epidemic in our city. It wasn’t just the lack of plastic bags that created the health risk, but it contributed to it.

Unintended consequences.

The plastic bag example is a case of unintended consequences and most of our actions, words, etc. even if well-intentioned have unintended consequences. I once warned someone about the lies and manipulation of another person, and the person I warned turned around and told the other person causing me continued problems for over three years. My desire to protect the person I gave the information to turned into an opportunity for her and her husband to hurt me and my relationship with several people. This example might sound like a small example but the stress the situation caused contributed to me being psychotic for over six months.

Unintended consequences.

They happen in our lives every day, all around us. There is no way to foresee them or to avoid them without living a completely sheltered life. As long as you are talking to people, going out in public, etc. there will always be unintended consequences.

Unintended consequences.

This reality, these possibilities, this path that we can go down without ever intending to, these ripples we can cause that can go on for miles, over mountains and for years, can create anxiety in people. I know they can create anxiety in me. Even though I have had bad results with unintended consequences, I choose to keep moving forward, but if I am more cautious, slower to make a move, more guarded don’t be surprised.

Unintended consequences can occasionally make you sick and can cause you hesitate before moving forward in case the landscape in front of you is about to burn.

It’s Not Personal and Lowering Expectations

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I need to work on my expectations and taking things personally. I know from years of being on this planet, and hearing the words of some wise people, that making things personal is most often just punishment to yourself. Most things that happen are not personal.

I am in a writing class and on the first meeting when the teacher asked me a question, I told her I have schizophrenia. The whole class heard, and now every time someone doesn’t respond to my homework, or my comments, I think it is because they think I don’t matter because I am just the woman with schizophrenia. Thinking that people’s response, or lack of response, has anything to do with me is self-defeating and ridiculous.

People don’t respond to us because they are busy; they prefer texting, they are shy, don’t want to, don’t need to, are rude, are sick, etc. I could go on with that list for ten more pages, and every excuse for people not responding would be more likely the real reason than it having anything to do with me or my having schizophrenia.

I need to take the advice of some strong women and toughen up buttercup! It is hard to put yourself out there, though and not to receive positive feedback in return – no smiles, no kind words, no words of support – just silence, nothing, nada. It is particularly hard considering the stories/essays/pieces I wrote were deeply personal. I have to remember though, that it is my expectation that people will respond, it isn’t a requirement of them.  I need to keep my expectations in check.

I know for some people, especially those of us who have trouble with isolating socially, it would be easier not to take any risks (this is true of everyone not just people with a mental illness). Not taking risks, means you have nothing to lose. But that brings the flip side of that scenario into focus – if you have nothing to lose, you have nothing to gain.

I think it is so important for people (everyone) to push past their comfort zones at least a little bit on a daily or weekly basis. Those of us who are on the road to recovery need to try to push our boundaries, or our boundaries will keep getting smaller and smaller and threatening to choke the life out of us. Most of us need to grow a little more comfortable trying new things and the more things we get comfortable with, the bigger our world gets and that helps with healing.

I know I can’t completely regain all the functioning I had five years ago (an office job, lots of travel, very social, etc.). But I can work to regain some things and maybe even add some that I didn’t have before. To do that, though I will need to keep taking risks, lower my expectations and not take things personally! It can be done; I know it can. The only thing holding me back is fear and myself. Everyone with schizophrenia has dealt with fear; we are experts at it – this should be one we can easily conquer.

A Look Back Over Three Years

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In March, I celebrated this blog’s third anniversary. In the three years that I have been writing about life with schizophrenia, I think I have tried to keep one message in the forefront, and that is, people with schizophrenia can look, act, care about, and live a life similar to everyone else.

Of course, I have also made sure to point out that everyone with schizophrenia is different. Just like everyone without schizophrenia is unique, so are we, and so is the way the illness manifests in each of us. Those of us who have schizophrenia may share similar symptoms, but how we experience those symptoms and the level to which they impact us varies tremendously.

I hope from reading my blog that people have more of a sense of compassion and understanding for those of us living with this brain disease. The biggest issue in helping is first to be able to relate to us as human beings. We were all born the same way everyone else was born. We all have or had a mother and a father.

Many of us have people who love and care about us, and that would be true if we were in the hospital, in prison or living on the streets. Just because someone has lost touch with reality and appeared to be a loner, doesn’t mean they don’t have family or someone looking for them, or that cares about their well being.

Schizophrenia is not yet curable, but for many people, it doesn’t have to be a life sentence. It is a chronic illness like other chronic illnesses, and it is possible for some people to manage it as such. (There are, of course, people who are medication resistant, or who doctors haven’t found the best or workable combination of medications to help them reach their full potential). And there are others who manage without medication at all (an impossible scenario for someone like me).

In my three years blogging, I have tried to write against stigma. I have tried to write against stereotypes. I have tried to put the most human face on schizophrenia that I possibly can. I have shared some of my childhood here. I have shared some of my heartaches here. I have shared some of my joys, my strengths, and my weaknesses.

I have tried to make myself as three dimensional, and as like everyone else as possible, because I believe before there will be a better treatment environment for the mentally ill, everyone has to see something in those struggling that reminds them of themselves.

This blog is dedicated to those people who can’t show you what they love, what makes them happy, what they hope for and dream about, I can only hope I have been a voice for those people. I want all of our lives to be better, and I hope I have created a bit of that here.

 

 

 

 

Taking a Break

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When I went to bed last night, I had no intention of waking up at 4 AM to watch the Royal Wedding. It just so happened, though, that I woke up at 4:30 this morning, so after I made coffee, and poured a glass of water, I sat on the couch and turned on the television. When I turned on the tv, Meghan and Harry were preparing to exchange vows. I spent the next forty to sixty minutes weeping. The tears were flowing so steadily out of my eyes that my hair and face were all wet. I can’t believe that this modern day fairy tale impacted me in such an emotional way.

When I was a little girl, I can’t remember ever wanting to be something when I grew up. In fact, I can’t remember ever answering that question that so many adults ask little kids as they grow. There were very few Disney Princesses in the early 70’s (Cinderella and Sleeping Beauty are the only two I can think of), and my first trip to Disneyland as a twelve-year-old was a disaster (for the record, I hated it). Because of these things, I don’t think I wished I was a princess growing up. So, that isn’t why the Royal Wedding made me so emotional.

Late this afternoon, I told my husband how I had wept through the ceremony, and I asked him why he thought I had that response. My husband thought it was because the news has been so bad, for so long, and there is so much negativity that the wedding was a chance to experience a love story, something beautiful, and all the hatred and racism we have been experiencing didn’t exist, at least for a moment.

I think my husband is right. The nightly news and bombardment of news on social media are impacting my mental health. Rarely do I see a story that is hopeful, uplifting, a connection between people and our shared humanity. I know that I can’t turn my back on current events entirely, because to do so is to be part of the problem. I am going to commit some of my days to reading stories or essays written by writers that deal with something besides Russia, war, guns, lies, investigations, impeachment, corruption, racism, bigotry, misogyny, etc. I can’t keep up this soul-crushing pace of bad news and negativity and keep a firm grasp on good mental health.

I hope that if you spend a good chunk of time on social media or watching the news that you will join me in adding some soul-enriching writing or entertainment to your day or week. I know taking a walk to the park helps clear my head a lot, but there is no substitute for reading an uplifting story of human compassion, love, selflessness, or heroism. I am going to be returning to my bookshelves with a renewed interest, and after that, I might take a trip to our city’s beautiful library. Hey, that’s a good idea for an outing. I’ll meet you in the biography aisle.

 

The Long Road to Recovery

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I know I wrote about identity recently; introducing and thinking of myself first and foremost as someone who lives with schizophrenia. I’ve thought more about it, and I discovered that the more I concentrate on developing a routine that includes journaling, sketching, blog posts, mini-essays for social media, and a few projects I am working on with other writers, the less I identify as someone with schizophrenia.

I have to say that I honestly think giving people with a brain illness something meaningful to do is an important part of helping them to live a fulfilling life. The more things I add to my schedule (like writing a blog post, or writing a poem, or sketching a picture, or taking a walk) the happier I am. At night before bed, I fill out a journal called, “Every Day is Epic” and I have found that the more productive I was during the day the higher I score my overall day on the “Epic Meter.”

I know that I can’t go back to working a forty hour a week job, and I am not having any luck finding a part-time job that I think would be a good fit for me. So, I have come up with some book ideas (to co-author with other writers), and I think that the book ideas (projects) are a good way to use my time, talents, and produce some income. I haven’t been successful at working on the projects for a set amount of time every day, but I am trying to work up to that.

No one taught me how to live a fulfilling life while managing the symptoms of schizophrenia. I have had to forge a path of my own making, and I think I am getting increasingly better at it. I am sure that therapists and counselors, and psychiatrists know that it isn’t healthy to think of your illness as who or what you are.

I am sure professionals also know that having meaningful tasks to do make a person happier, but they don’t usually spend enough time with patients or clients to discover how to implement those things into real life. Also, they may not be aware that someone thinks of themselves first as someone with schizophrenia before they think of themselves as say, a writer, teacher, painter, baker, cook, artist, quilter, knitter, etc. Also, they may focus on if someone is hearing voices or not, and not how that person is spending their days (like are they sitting around in a room all day with no one to talk to and no meaningful tasks to accomplish).

My goals are to write for two to five hours a day. I don’t know if I can do that, but I feel like it is possible and I am going to shoot for it (maybe starting with a half hour, or an hour at a time). Spending five hours a day at something may not sound like a lot to many people. It would be a huge accomplishment for me, though, and every minute I am writing, I am identifying not as someone with schizophrenia, but as a writer, or an artist or a business partner (with the co-authors of the projects).

I am working my way toward recovery one day at a time, and I think I am discovering some life-changing treasures along the way. I hope we can share the riches together and all live more productive, fulfilling, and meaningful lives.

 

Looking for Support? Don’ t Trust the Web

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Trigger Warning: Suicide

There is so much that is helpful and beneficial on the internet, and there is so much that is harmful and negative. Three of the things I love most about the internet is the ability to network with writers, and mental health advocates/agencies/nonprofits, the access to many university-level classes in writing, and the access to information to satisfy my curiosity or for research.

But like I mentioned before, the internet is not all healthy, rewarding, educational. Two of the things that I find harmful on the internet is the comment section under articles I write (I have written about suicide and had people comment that I should kill myself), and the support groups that are unmoderated on social media like Facebook.

There are several groups for people with schizophrenia, and so frequently I see young women posting pictures of themselves in the groups, and it appears they are simply looking for attention. I don’t see how that is at all relevant to schizophrenia or helping or supporting others. There are also posts that frequently say that the person is thinking of harming their self. I think it is awful to post those kinds of alarming situations anonymously in a group of people who are already dealing with mental health issues. Of course, those posts get hundreds of responses asking how to contact the person, how to report the post to Facebook, asking the person to call a crisis line, etc.

I realize that some people are all alone and have nowhere else to post their pain and their struggles, but it isn’t safe to do that sort of thing on social media or anywhere else on the internet. If you are in crisis, there are people just waiting to tell you to go ahead and harm yourself. There are also trolls that use those rooms/groups to play jokes on people (of course I don’t think it is funny, but they do).

I love the internet, and I am addicted to social media but other than using it to network with people (helping me stay less isolated), I don’t use it to better my mental health. I know that resources are few and money is tight for so many people, but if you are using the internet to get support, or get advice, make sure that you are dealing with a group or people who are safe and legitimate.

Please don’t post about a crisis and expect professional help. If you are having a crisis, please go to the nearest hospital or call your local crisis line. The internet is great and provides so many benefits to our lives but it can also be dark and dangerous, and I don’t want anyone to get hurt.  Stay safe friends.

It is all About the Risk

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People with schizophrenia (and those without) frequently have difficulty in social situations. I figured out what the big deal is behind some of the anxiety, discomfort, awkwardness of social situations for so many of us, and what I discovered was that it has to do with risk. We all have to risk something to be around other people and interact with them.

I am in a class right now, and I am required to critique other writer’s work. I critiqued one woman’s essay and completely misunderstood what she wrote. She may have thought that I am dense, or that I am a poor reader, others in the class may have thought that my schizophrenia impacts my cognitive abilities or many other things. The point is, to be in the class, I have to take risks. I have to risk looking stupid. I have to risk misunderstandings of all kinds. There is so much to risk just by taking a class.

Going to parties, or having a job, or going to coffee with a friend, all of these things require risks on different levels. Having a job involves a lot more risk than going to a party, and having coffee with a friend requires less risk than that of attending a party. But all social interactions require us to take risks. The better we are at taking risks, and recovering from flaws, mistakes, failures, etc. probably corresponds with our level of anxiety about being with people.

Before I was on medication, making a mistake or being embarrassed could cause me to spend the whole night awake thinking about what a fool or failure I was, and I would play the incident out in my head over and over again. I would torture myself. Now, that I am on medication, and my inner voice is very subdued, if not almost non-existent, I am not as hard on myself. I wonder if some of this has to do with age and the fact that I am more gentle with myself in general? I’m not sure, but for whatever reason, I recover much quicker from social “mistakes” than I used to.

I think this “recovery” from slip-ups, missteps, accidents, misunderstandings, etc. is what keeps me from slipping into complete social isolation. I am not “horrified” that I am an imperfect person and that those imperfections play out in the social arena every time I enter it. I also don’t consider myself a complete failure or idiot for making a mistake or looking foolish.

This discovery felt very relevant to me this morning after thinking about my class and my interactions with other people.

A Change of Identity

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I applied for a blogging job (writing about schizophrenia), and the editor said I wasn’t a good fit. I waited months to hear from the company, and I held on to hope all of that time that I might finally have a part-time job. So, I cried when I received the e-mail rejecting me. I received a gift from my brother and his partner the same day in the mail that said, “We heart you” so, thankfully there was a band-aid for my wound.

Considering I wrote about happiness yesterday and trying to love the negative along with loving the positive, I tried to love the news about the blogging job (it took me a couple of days to get around to even considering loving this news).

For almost twenty years I hid the fact that I have a mental illness. I hid my diagnosis from family (my husband’s) as well as friends. I didn’t tell people about my illness because I was ashamed of it. Then, three years ago, I posted an essay on Facebook and opened up to the whole world. That opening up, revealing my diagnosis, has not been a bad experience. I have met wonderful people, and feel that I have grown into a role as an advocate/voice for people with schizophrenia and other brain illnesses.

Hiding an illness takes a lot of energy and the shame and embarrassment behind the decision to hide it wears on a person, too. Coming out in as bold a fashion as I did (starting a blog, writing dozens of articles and essay and publishing a book) puts the focus squarely on the identity of illness. I was saying loudly, clearly, and to everyone that would listen, that I have schizophrenia.

While I was shouting to the world that I have schizophrenia I was also trying to convince and tell people that I am a wife, sister, daughter, friend, aunt, writer, student, etc. but I don’t think that message was nearly as loud or nearly as obvious.

Well, not getting the job as a blogger who writes exclusively about schizophrenia pushed me a way I have not been pushed before. From now on, I am going to introduce myself to the world as a writer first and somewhere down the line as someone with schizophrenia (if that even comes up). I am no longer going to center my identity around someone who has schizophrenia.

If I had landed the job blogging twice a week about schizophrenia, I would have to be thinking about my illness all the time, researching, writing and constantly trying to find ideas to write about. I am currently taking a class for writing non-fiction (something I regularly do), and I am not writing about schizophrenia. I am writing about my life as a kid, growing up, my family, mistakes I made, etc. In fact, every assignment but one has been about my life before I even knew I had a mental illness.

So, am I happy now? Do I love the negative along with the positive? I don’t know if I love the negative, but if you read this blog, you can see I certainly have reason to be hopeful and even thankful I didn’t get the blogging job.

There might be something to this theory about happiness after all.

Is it Possible to be Happy and Have Schizophrenia? Spoiler: Yes.

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Last night before going to bed, I read a long article about happiness. Of course, I thought I would remember which magazine it was in so I could write about it today, but I can’t. I tried Googling words and phrases from the article, but it turns out there are a lot of articles, essays, and general information about happiness on the internet.

What stood out about this article to me was the idea that you have to love the challenges and negative things in your life to be truly happy, and you have to look at life as a game. In the article, the author wrote about how if you view life as a game you wouldn’t want that game to be without challenges.

Okay, so before drifting off to sleep, I started thinking of my diverticulitis which has completely changed my life. I am so careful about what I eat, how much I eat, how much fiber I get, eating fruits and vegetables, and we used to go out to eat all of the time, and now I would prefer to eat at home. It also presents challenges when we are traveling, so we don’t travel as much.

What can I love about diverticulitis? Well, I eat 5-7 servings of fruits and vegetables every day. That is something to love about diverticulitis. Having the illness got me to eat a healthier diet. Also, I am by far more mindful of what I put in my body. This isn’t to say, I don’t eat potato chips and chocolate, I do, but I never engage in mindless eating now when before I did. Lastly, having diverticulitis helped me learn that I have willpower and a great deal of control over my actions. Okay, so those were the only things I thought I could stretch and say that I love about having diverticulitis.

After I did the exercise with diverticulitis, I had to try schizophrenia. Is there anything I can love about having schizophrenia? Even writing the word love and schizophrenia in the same sentence is difficult, but I am going to move past that and try the exercise.

I like the woman I am with schizophrenia, and I don’t know who that woman is anymore without schizophrenia. There are symptoms that I know are my illness, but there are other things about me where I can’t separate the illness from my personality. So, by loving/liking myself, I could also say I love/like schizophrenia (definitely not all of it!). But there are a few things worth mentioning; I think schizophrenia has increased my compassion, and having schizophrenia has made me more empathetic. Schizophrenia has helped me see the bigger picture which includes me, and many others who are both like, and not like, me. Schizophrenia has helped me make connections in my brain and my thinking that I might not otherwise make.

There you have it; I was able to love two of my biggest health concerns for some of the things they bring into my life. Am I one step closer to happiness? Well, I already consider myself happy, so no, but if I keep looking for the positive buried in the negative I might end up being deliriously happy, who knows?

Progress, but Beware

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A digital pill, one that allows doctors or family members to monitor compliance with medications, was approved by the FDA. It is revolutionary. It sounds like the perfect solution for seniors who have complicated medication routines and need help remembering when to take this or that pill. The dark side of the discovery is that the potential for overreach and abuse is enormous.

The pill, equipped with a sensor, is activated when it hits stomach fluid and sends that data to a patch worn on the rib cage of the user. The information is then transmitted via smartphone to everyone “approved,” by the user.

That all sounds on the up and up and if my grandparents were still alive it would have made life so much easier for me because getting them to take their medications at the right time was an obstacle we never fully conquered. But this digital breakthrough wasn’t approved for pills for blood pressure or Alzheimer’s, or statins. It was approved for Abilify, an antipsychotic medication used mostly for people with schizophrenia, bipolar disorder and in some cases depression.

If that doesn’t sound alarming to you, maybe you don’t know the history of mentally ill people’s treatment in this country. A quick Google search will reveal that before the time of World War II many doctors believed in, and practiced, eugenics. Up until the 1970’s some states still had sterilization laws on the books. And of course, there were life-long stays in institutions. Few can claim ignorance about the lobotomy with the last “procedure” performed in 1967. And today, it is difficult to get treatment for a mental illness, and many people who suffer from one are on the streets or in prison.

With that being our history can you blame those of us with an illness like schizophrenia from being concerned? Will the pill be used to coerce parolees to take their medications? Will psychiatric facilities require the use of the digital pill before recommending release back into the community? Will Social Security require those on disability to report their medication compliance?

If schizophrenia weren’t the most demonized of the mental illnesses, I wouldn’t be as concerned. But the fact is every time there is a mass shooting in this country the media is quick to bring up the possibility of schizophrenia, and Hollywood doesn’t help that image at all as they never seem to tire of writing the creepy, lone killer as someone suffering from schizophrenia.

The reality is that mass shootings are more tied to a history of domestic violence than anything else and that people with schizophrenia are more likely to be the victims of crimes than the perpetrators of a crime. Also, they are more likely to hurt themselves than others.

It would be convenient for the public, lawmakers, and caregivers if everyone with a mental illness could be chemically restrained and there was a way to monitor and track that. I think everyone would sleep better at night, but it is a false sense of safety and a violation of rights.

I would like everyone who suffers from the same brain disease as I do to have as close as possible to a “normal” life, but that should remain their choice even if most people believe those who are ill are incapable of making that decision.

Hopefully, the people prescribing this new technology set limits on its use.